Nobody Said it was Going to be Easy

TGIF! Wow. What a week. I really hope yours was better than mine. As I have mentioned in some of my previous posts Turbulence of Lyme SymptomsFire in the Hole, and Derailed, there is a lot of inconsistency in how Lyme will manifest itself each and every day. There are some things, in my case, that stay pretty constant such as daily headaches, joint pain, and fatigue. But then there are those other issues that crop up from time to time, I guess maybe they are flares?, and it is impossible to prepare. What’s the saying, the devil is in the details?

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And so last Sunday, I started having severe nausea. It lasted the entire day. I couldn’t eat, sleep or do anything. I just laid in bed, trying not to move around. The moving made the nausea worse. Indeed, it was a day where I just wished I could get out of my body for even like 10 minutes to get some relief. I chalked it up to eating some jalapeno sausage that morning; I knew I shouldn’t have eaten it but it was delish but soooo not worth it.

Unfortunately, no. The illicit sausage was not the problem. On Monday, when I tried to get up to get myself ready for work, I felt really nauseated. Then, the headache joined in. There was no way I could make it to work, let alone teach all day. Monday and Tuesday were more of the same. In the meantime, I was trying desperately to get into my Lyme doctor (LLMD) but there were no appointments available- for the entire week. Whaa? They were very clear that they could NOT fit me in even if I came in when they opened and waited. When I explained again my symptoms, the front desk told me that a nurse would return my call that afternoon. That was Tuesday. By Wednesday evening, no one had called me. Although I was able to get up and go to work on Wednesday, by that afternoon the nausea was back rearing its ugly head. Now, please do not think that I have an entitlement issue. I realize doctors are extremely busy and overbooked. I realize that there are other patients out there who also need to get in for a visit.

On the flip side though, this is my doctor who is treating me for Lyme disease. I can’t just go “anywhere” to get treatment. Other doctors, and almost all here in the South, are not trained on Lyme nor do they actually believe it exists here in Texas. This is the state of the medical options we have for Lyme here and in way too many other places in the US. In fact, Lyme is endemic to Texas. Check out this research done by Texas A & M University “Lyme Endemic to Texas.” Thus, going to another doctor is really more of a waste of time than anything. The ER was an option if I started having other issues, but mostly it was the severe nausea that was the new thing. All of my other symptoms are dealt with in the daily grind; they ebb and flow. But the nausea. God, it was (is) the worst.

It feels like I need to throw up (sorry TMI!) but I can’t. That kind of nausea. No vomiting though. I tried to stay very hydrated. I tried eating Saltines off and on. Yet, about 30 minutes after eating or drinking tea or Sprite, hello tummy monster! Anyway, I emailed my doctor, and I was able to get in yesterday afternoon. Supposedly, I have a virus. I say supposedly because honestly, I think it is more Lyme related than anything else. But I took what I could get which at this point was to get some sort of relief from this symptom. I was prescribed Tamiflu and anti-nausea meds and told to come back next week if it was still going on. Today was better because of the anti-nausea meds, but I’m still having experiencing the nausea.

This is how the Lyme bacteria works. It is a very stealthy and intelligent. According to Lymedisease.org, “Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. If not treated as soon as infected, then the chances of it reproducing and getting into every system of one’s body is extremely probable. Now granted, not everything can be attributed to Lyme. But for me, most of the time, my symptoms are directly related to Lyme disease.

Again, I hope you all had a much better weekly journey than I did. Take care – B

 

 

 

A Rallying Cry

When first diagnosed with Lyme disease, and after learning more about it, my attitude (if indeed I had one; I was extremely sick) was one of “OK, I got this.”

When my doctor said that most likely Lyme had been in my system for awhile, perhaps 10-20 years before it wore me completely  down, and that it might take awhile before I would start feeling better, I thought “OK, I got this.”

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When I passed the year mark of being in treatment, and I was not feeling much better, I still believed, “OK, I got this.”

Now, after almost 3 years of treatment, after endless months of medications and supplements, after having a PICC line, after thinking at times when I have been so very ill that I might die, or that I want to die to get some relief from these symptoms, after giving up so many things (activities, trips, relationships), I still know in my heart that  “I GOT THIS.”

Do you have a rallying cry or something you can tell yourself when things get tough? Please share!

Peace – B     P.S. I had to add the other 2 photos for sure 🙂

BraveheartRallyCry

My Bed is my Bestie

Totally sad, but true. Since Saturday, not much has changed. My bed is my Bestie. I don’t even know how many hours I’ve spent in bed feeling not so bueno. Yesterday was more of sleeping, a few loads of laundry, reading, resting. I did manage to get out of the house, only because I had to, and so I drove around a bit near here and took some pictures. It was the Big Event this weekend, at least for moi.

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Winter sky of blue

This time of year it the most beautiful to me. I think it has to do with the crystal blue expansive skies, the golden colors mixed with grey and brown. It’s cold. But not the tepid cold. More of a biting cold. The kind of cold that makes your eyes sting. No wind though. Just pure perfection. The beaches are also my favorite this time of year. The ocean stirs no matter what is happening on shore. And empty, the beaches are empty of people which is total bliss. Only the birds and the sea creatures are scurrying around. Hearing the waves lap, the seagulls squabble, feeling the rigid breeze is all inspiring.

 

But I didn’t go to the beach. The nearest one is about an hour plus away not even considering traffic, and hey, I can barely make it to the front door. No can do. This morning was just more of the same. Headache, stomachache, body pain. My alarm screamed at 5 a.m. and so did all of my body. This Monday was so not happening.

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January 2016

 

It’s disappointing to feel terrible enough that I have to take a sick day. I know that is what they are for, but in the past, I would take a sick day and then feel better. Now, I take a sick day and just pray I can handle the rest of the week, whether that is 4 more days or just one. It’s frustrating. What did I do today? I ran the dishwasher, did a load of laundry, and walked out to get the mail. Otherwise, I spent the rest of the day in bed with my BFF. We snoozed, watched some t.v. and did a smidge of reading. Sounds delightful to many I’m sure. But all the while, the Lyme played in the background, the pounding headache, the sore joints, the brain fog, and the stomach issues. Constantly moving to escape the pain if on one side too long, I have 2 heating pads going. I thought about adding a 3rd but that is a little excessive and truly ridiculous. And the not knowing if the next hour or day will be better? That is the most frustrating. This unpredictability of this disease is why I am trying to do my best to just relax and enjoy the times when I do feel decent. There is no “storing” up feeling good nor energy. Both things come and go, flitting in and out like a hummingbirds. So quickly, I can be at about 80% then, bam, 20%. So it goes.

Hopefully, though, now that I rested today and I was good about not being too pissed at myself, I can go to work tomorrow and be productive. Sorry BFF, you’ll have to handle the rest of the week alone.

Until next time, my people, peace and joy to you and yours – B

 

 

Accomplishment for Today?

Make that a zero for accomplishments today!

Pretty much nothing. I have been lazy all day long. Or honestly, resting. I did get two loads of laundry done, and I paid some bills online. Other than that though, I spent most of the day in bed with the heating pad and the puppies.

This was our first week back at work after Winter Break. While it went well and I have no complaints, I am wiped out. And I try not to worry about the next close to 18 weeks this semester; it is difficult not to. It isn’t productive at all, and I know this, so moving on.

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image from http://www.myowlbarn.com

Also, I have been without the BB drops I have been taking the past 7 weeks for about a weekish. This was mostly due to my own inability to plan ahead. I just started back on them last night. I’m trying not to lose ground, so I am back on at 12 drops twice daily. We’ll see how that goes!

The weather here which has been damp and cold, is causing me stiffness and lower back pain for most of the week and even more today. At least I will blame it on the weather. But who knows if it is the weather or a Lyme flare or both? Ah, the mysteries of Life!

Oh, wait, I did go outside, and believe me it was mega windy and cold. No snow here though, and so that makes it much less of a big deal for sure. Deciding to move the 2 bags of birdseed, 35 pounds each, into the storage shed was a large task for me. But the bags have been either in my car trunk or outside the gate to the front yard for a solid 2 weeks. Moved them inside the gate, into the wagon, filled all of the feeders, like 5, and then moved the bags into my mom’s little storage shed (she lives next dorr and we share about an acre and a half). There you have it. The big action for today! At least all of the birds were impressed and happy.

It may freeze tonight but it is kind of cloudy out. If it clears off, we’ll get a freeze tomorrow night for sure. Wish me luck that I get more done tomorrow. At the very least, I will have to run into the small town near us and get a coffee maker. Mine took a dive today and well, there is absolutely nothing worse than not having that Juice of Life cup of coffee when I rise. It ain’t pretty people. I hope you all had a waaaay more productive and less painful day than I.

Until we meet again – B